growth disorder

[Guest guest]

Hello all! Yesterday I had an experience with a lady at my non-RSS

son's basketball practice that I thought I would share with you all.

I was sitting in the bleachers chit-chatting w/ a fellow mother and

grandmother as practice was happening. Christian, my 3 year old RSS

son, was with me. It took this grandmother longer than most to ask,

as nonchalantly as she could, how old Christian was. (I knew it was

coming. It always does, doesn't it?)

I had a little worse of an attitude than I normally do that

night because I had taken both boys to the Mc's playland that

afternoon and watched a little girl, a year and 1/2 old, meet

Christian eye to eye. Although I've come a long way in 3 years,

those moments still tend to bring me down a bit.

Anyway, when I told this grandmother how old he was, both her

and her daughter did a double take. (That always happens too,

doesn't it?) Now, I've had these conversations a lot with

strangers. They usually start with people asking how old he is or

making a comment about how cute is. And, after I tell them that he

has " a rare growth disorder, " their next comment is usually very

supportive. This grandmother looked me straight in the eye and

said " Oh, I'm so sorry. " What!?! That was a new one to me. You

would have thought I told her he was dying or something. I just went

into how his clothes last so long b/c he doesn't grow that much and

how there are far worse things that he could have. And how I could

pretend that he was 18 mos. and speaking in full sentences. Wouldn't

that make him look like a genius? (That could also explain the

rather large head too, huh?) Of course that last part was a joke,

meant more for me than her. I needed to lighten the conversation

before I knocked this ladies head off. Heehee!

As I try to put it in perspective today, I'm just grateful that

1)he was busy playing and 2)he isn't quite old enough to understand

what she meant. I don't know what I'll do if this happens in a few

years and he hears.

I guess it doesn't matter to some people what you call it.

They'll just see it as a death sentence anyway. Luckily, we have a

much better perspective.

Thanks for listening(reading). It's so nice to be able to vent

to people who understand.

(mom to ,6, non-RSS and Christian,3, (RSS) and really damn cute

(heehee)

[Guest guest]

Hi ! I have exactly the same experiences with Imogen.' ahhhh...isn't she

cute....how old is she?' I always start my answer with 'prepare yourself for a

shock' then Imogen pipes up with 'I'm 6!' Then there is stunned silence......and

usually a repeat of how cute she is etc.

You just learn to get used to it.As you say...there are so many worse things out

kids could have!!!

Eileen (Imogen RSS age 6, 36 " , Lucy 13, twins Owen and Natasha 9)

rssmom1 RSSMOM1@...> wrote:

Hello all! Yesterday I had an experience with a lady at my non-RSS

son's basketball practice that I thought I would share with you all.

I was sitting in the bleachers chit-chatting w/ a fellow mother and

grandmother as practice was happening. Christian, my 3 year old RSS

son, was with me. It took this grandmother longer than most to ask,

as nonchalantly as she could, how old Christian was. (I knew it was

coming. It always does, doesn't it?)

I had a little worse of an attitude than I normally do that

night because I had taken both boys to the Mc's playland that

afternoon and watched a little girl, a year and 1/2 old, meet

Christian eye to eye. Although I've come a long way in 3 years,

those moments still tend to bring me down a bit.

Anyway, when I told this grandmother how old he was, both her

and her daughter did a double take. (That always happens too,

doesn't it?) Now, I've had these conversations a lot with

strangers. They usually start with people asking how old he is or

making a comment about how cute is. And, after I tell them that he

has " a rare growth disorder, " their next comment is usually very

supportive. This grandmother looked me straight in the eye and

said " Oh, I'm so sorry. " What!?! That was a new one to me. You

would have thought I told her he was dying or something. I just went

into how his clothes last so long b/c he doesn't grow that much and

how there are far worse things that he could have. And how I could

pretend that he was 18 mos. and speaking in full sentences. Wouldn't

that make him look like a genius? (That could also explain the

rather large head too, huh?) Of course that last part was a joke,

meant more for me than her. I needed to lighten the conversation

before I knocked this ladies head off. Heehee!

As I try to put it in perspective today, I'm just grateful that

1)he was busy playing and 2)he isn't quite old enough to understand

what she meant. I don't know what I'll do if this happens in a few

years and he hears.

I guess it doesn't matter to some people what you call it.

They'll just see it as a death sentence anyway. Luckily, we have a

much better perspective.

Thanks for listening(reading). It's so nice to be able to vent

to people who understand.

(mom to ,6, non-RSS and Christian,3, (RSS) and really damn cute

(heehee)

[Guest guest]

hi stacey-

i know what you mean, i have had people say we are sorry to me when

i have told them why for a 3 yr he is so small. i always just tell

them that i am not sorry, thats the way god made him. but on an

positive note we went out to dinner last night and the waitresses

wre just " eating him up " and asked his age and wanted to know about

rss (after i told them and explained) and just thought he was the

greatest and so cute! so luckly not all people are ignorant in this

world!

jodie

(nicholas-5 nonrss, christopher-3 rss 22lbs 33 " , johnathon-6 m

nonrss)